Managing Problems With Thinking and Behavior In the Home: Strategies for Caregivers

1. Managing Problems With Thinking and Behavior In the Home: Strategies for Caregivers Presented at the 20th Annual Pacific Coast Brain Injury Conference Vancouver, British Columbia February 16, 2007 Angelle M. Sander, Ph.D. Baylor College of Medicine/ Harris County Hospital District Department of Physical Medicine & Rehab Memorial Hermann|TIRR Houston, Texas

2. Types of Brain Injury • Traumatic brain injury • Closed head injury: brain is damaged without opening the skull • Car accidents • Falls • Assaults with blunt instruments • Sports injuries • Penetrating head injury: a sharp object goes through the skull and enters the brain (e.g. gunshot wounds; stab wounds)

3. Types of Brain Injury • Stroke • Hemorrhagic • Ischemic • Anoxia: oxygen to the brain temporarily cut off • Brain tumors

4. Types of Brain Injury • Multiple sclerosis and other demyelinating syndromes • Dementia: progressive diseases that usually result in decline over time

5. How Long Will Problems Last? • Traumatic brain injury: fastest recovery in 1st 6 months, with more gradual changes up to 1-2 years • Stroke: peak of recovery at approximately 6 months • Anoxia: Peak of recovery at approximately 6 months • Brain Tumor: variable depending on type of tumor and site

6. How Long Will Problems Last? • Multiple Sclerosis: variable depending on site of demyelination and remission periods • Dementia: progressive decline

7. Typical Problems After Brain Injury • Reduced Awareness of Problems • Reduced attention • Reduced memory • Problems with language and social communication • Problems with initiation • Problems with organization • Emotional and behavioral changes

8. What Is Reduced Awareness? Reduced ability to recognize problems caused by damage to the brain

9. Reduced Awareness Does Not Equal Denial • Reduced awareness is a neurological problem resulting directly from damage to the brain. • Denial is a psychological reaction to a problem- aimed at defending self-esteem; implies that the person is at least partially aware of the problem

10. Signs of Reduced Awareness • Generally does not seem concerned about their limitations, as if nothing is different • Insists that he/she can do things as well as before the injury or wants to do activities you don’t think he/she is capable of • Complains that the doctor and you “don’t know what you’re talking about.”

11. Impaired awareness may affect some areas of functioning and not others (e.g., may realize they have memory problems, but not realize that their ability to drive is impaired).

12. Strategies for Increasing Awareness • If a person does not understand that they have a problem or cannot recognize one when it’s occurring, provide them with cues to help or re-arrange their surroundings to make things easier for them. • Memory problem- Use checklists of activities; wall calendar/schedule • Getting off topic- Develop a signal that will alert them when they’re off topic • Organization: Use checklists.

13. Strategies for Increasing Awareness • If a person understands they have a problem and recognizes it when it’s occurring, but can’t anticipate a problem, teach them to use strategies in all situations. • Carry memory notebook everywhere in case they need to refer to it. • Make checklists for all activities. • Always watch listeners for non-verbal cues • Ask for feedback from listeners • Watch your behavior closely

14. What You Can Do To Help Your Family Member • Be patient- Your family member is not ignoring problems on purpose. • Point out problems when they occur- in a kind and calm way. Do not yell or get angry with them.

15. What You Can Do To Help Your Family Member • When it is safe, let them make mistakes on their own. Remember to talk things over with them after they make the mistake. Help them think of a way to get around the problem next time.

16. Memory After TBI • Memory problems are common following all types of brain injury. • Most people remember information from their pasts, but may have trouble learning and remembering new information. • Memory for non-routine things (like medical appointments) may be worse than for routine things (like when a TV show comes on).

17. What Types of Things Might Your Loved One Forget?

18. Common Memory Problems

19. Common Memory Problems

20. Strategies for Improving Memory • Help your family member make a memory book • Possible sections include: calendar; to-do lists; address book; information about their injury (e.g., dates, hospitalizations); daily journal • Help add important dates, appointment times, checklists • Cue them to carry this book with them everywhere and to refer to it regularly

21. Strategies for Improving Memory • Allow extra time for your family member to learn new things. Keep in mind they will learn more slowly. • Repeat things that you want them to remember. • Write all important information down. • Use a digital watch to keep up with date and day of the week.

22. Strategies for Improving Memory • Organize! • Keep household items in specific places. For example, have a special place for keys. • Make sure everyone in the household returns items to their special places. • Label drawers and cabinets.

23. Memory & Medication • Correct medication and dosage time is crucial to your loved one’s health. • Buy a pill box and label each dose with the time and date they should be taken. • Each dose should go in a different section of the box to avoid confusion.

24. Attention After TBI • Attention and memory are closely related. • Sometimes it seems like your loved one is having trouble with memory when instead they may have a hard time paying attention to what they need to remember.

25. Common Attention Problems • Trouble keeping their mind on one thing. • Easily distracted by noises that wouldn’t have bothered them before. • Difficulty doing more than one thing at a time (e.g., cooking and answering the phone). • Difficulty “switching gears” or shifting focus from one thing to another.

26. Strategies for Improving Attention

27. Strategies for Improving Attention

28. Common Language Problems Problems with expression: • word-finding difficulty • word substitution errors (e.g., uses “pencil” for “pen”) • slurred speech • slowed rate of speech • may speak in short sentences or lose train of thought

29. Strategies to Improve Expression • Allow more time for them to answer or to explain what they want. • Encourage them to use gestures or signals to help express themselves. • Encourage them to speak slowly and not worry too much about finding the right word. • If they can’t think of the proper word, encourage them to tell you something about that word (e.g., “that thing with the tires that you use to haul stuff”)

30. Common Language Problems Problems understanding others: • may not follow directions accurately • responses may not be related to what you actually said • may have difficulty following group conversations • may have trouble “keeping up” with others who speak quickly

31. Strategies to Improve Understanding • Every so often, ask your loved one if he/she understands what you are saying. Ask him/her to repeat the information to you. • Encourage them to ask for information to be rephrased or repeated. Reassure them we all have to do this sometimes. • Use gestures and signals to help you communicate with them. • Try to have only one person at a time speaking to them. • Encourage them to ask the speaker to “slow down.” Reassure them we all have to do this sometimes. Slow down please

32. Communication and Social Interaction Even though your loved one uses words and sentences adequately, he/she may still have problems interacting with others because of changes in social communication skills.

33. Social communication skills include: • Starting, maintaining and ending conversations • Selecting and maintaining topic • Awareness of feedback from others (e.g., can they tell if their listener is interested in maintaining the conversation?) • Nonverbal communication

34. Non-Verbal Communication • Facial expressions • Body posture and gestures • Social distance • Eye contact • Physical contact (e.g., touching another’s shoulder) • Pauses, pitch and tone

35. May also have difficulty “reading” or “picking up” another’s social cues, especially those relatively subtle cues. • Changes in your loved one’s language and social communication skills can lead to problems interacting with family & friends. • It may seem as if personality has changed.

36. Strategies to Improve Social Communication • Develop a signal that will let your family member know when they have gotten off topic. For example, you could hold up your index finger. Signals may also be used to let them know they are repeating themselves, providing too many details, or asking an inappropriate question. • If signals don’t work, try saying, “We were talking about…” Remember to use kind words and a gentle tone of voice. • Praise them when they start conversations on their own.

37. Strategies to Improve Social Communication • Encourage them to practice starting and ending conversations with others in their community (e.g., sales clerks, waitstaff). • If they seem to use personal space or contact inappropriately, explain appropriate distances and contact. Remember to use kind words and a gentle tone of voice. • Encourage your loved one to practice non-verbal communication in the mirror.

38. Coping with Initiation and Organization Problems

39. What is Decreased Initiation? Trouble starting activities on their own. Decreased initiation is a result of injury to the parts of the brain that control our ability to make plans and start activities.

40. Examples of Decreased Initiation • Do not seem interested in things they liked to do before • Seem to sit all day doing nothing or staring at the TV • Need to be reminded to bathe or brush their teeth • Knows what needs to be done, but doesn’t seem to be able to get started

41. Decreased initiation is not the same as decreased motivation. • While it may look like a symptom of depression, decreased initiation does not always mean your loved one is depressed. • Accept that this problem is a result of the brain injury. Your loved one is not being “lazy.” He or she may have little control over this behavior.

42. Strategies to Improve Initiation • Help them make a daily activity schedule • Ask them what activities they like to do • If they cannot come up with realistic activities, give them a choice of 2 or 3 doable activities • Make the activities a part of their daily routine (e.g., take a walk after breakfast) • Make checklists to help them start and complete activities

43. Strategies to Improve Initiation • Physical or cognitive problems may prevent them from resuming activities they enjoyed before their injury. Help them come up with new activities they can do. • At first, try new activities with them and help them cope with problems they might face (e.g., frustration or fatigue).

44. Strategies to Improve Initiation • Find something they really like and use it to reward them for being more active (e.g., if they take a walk around the block, they can rent a movie). • Get them involved in a support group for persons with TBI. • Get them involved in a church group or volunteer organization.

45. Examples of Organization Problems • Difficulty organizing their time to get things done (e.g., may tell someone they can be at a party at the same time they have another appointment) • Trouble setting goals, planning the correct steps to reach a goal, or completing the correct steps to reach a goal

46. Examples of Organization Problems • Trouble completing tasks in the correct order (e.g., does not put soap in the washing machine when washing clothes) • Trouble getting ready for daily appointments, school, or work

47. Strategies to Improve Organization • Break activities down into smaller steps. • Use checklists to help organize daily activities. • Use checklists to keep track of the steps needed to complete a particular activity. They can check off the steps as they do them.

48. Example of a Checklist Getting ready in the morning • pick out clothes to wear • lay clothes on bed • take a shower • brush teeth • get dressed • comb and fix hair • make and eat breakfast • take medications • feed the dog • get things together • memory book • keys • wallet • lunch • leave the house

49. Strategies to Improve Organization • Have them use a memory book or calendar to keep track of their daily schedule. • If they have trouble getting organized to leave the house in the morning, have them get some things ready the night before (e.g., choose clothes, get together anything that may be needed for the outing)

50. Coping with Emotional and Behavioral Changes